Thank you for this excellent and eye opening article about the truth behind what we hear about clinical trials under the FDA’s watch. Deeply appreciate your work!
Thank you for this excellent and eye opening article about the truth behind what we hear about clinical trials under the FDA’s watch. Deeply appreciate your work!
Thank you for this! As a person with my own and also familial experience who has worked as a “professional” for decades in non-profits, I could not agree more about the deep and neglected value of personal truths, perspectives, lived experiences and shared power.
This quote is one of many that hits home,
“They suggest that “academic programs include and recognize persons with patient experiences—who could also be students—as official members of the pedagogical team and include them in all levels of the educational continuum (from admissions to curriculum design, teaching, assessment, and program evaluation).”
You and the authors of this study are speaking to a deep and neglected truth and problem of epistemic power and oppression.
So very very heart wrenching and powerful. Thank you for sharing your courageous work
Yes, agree that the economics of for-profit health”care” including the medicalizing of mental health”care” has led to the co-optation (and colonization) of the wisdom of lived experiences. Big Pharma and the Big Healthcare Industry profit from the status quo. This is a huge problem, driving so many other oppressive forces including robbing us in the U.S. of the last bits of our democracy with Citizen’s United in 2010 and now the loss of RBG:-( Systems of power are all related. Thank you for speaking to this one, perhaps the biggest and most inequitable of all!
I hear you and would want a peer partnered dialogic approach such as Intentional Peer Support combined with a humanistic and systems oriented therapeutic dialogic approach (not biomedical type of practice) which I have found helped our family keep my young adult son out of the hospital completely many years ago and as a result he never landed in the horrible system you describe. I also have experience with the medical models‘ dominating and closed minded and sometimes horrible practices… I think all types of systemic power and compensation need to be equitable between peers and other professionals. Thank you for your thoughts.
Removed at request of poster.
Such a powerful and moving description of the value of peer-professional partnerships in dialogic work. POD facilitators that include a 50:50 balance between peers and other professionals seems to be a great way to both help prevent the cooperation and tokenization of the peer approach and to address the balance of power in social network meetings.
Such a powerful and moving description of the value of lived experience and how it can be brought into practice. Thank you
Thank you for sharing this story about your difficult journey through and beyond NAMI. It deeply resonates.
I hear you about the slippery slope. We used a dialogic approach (based on Open Dialogue) successfully with my 19 year old son to avoid hospitalization and the biomedical model approach to altered states…and 6 years later he has moved beyond these (for him) largely existential and growing up in this crazy world difficulties. I know what you are referring to in terms of the abuse potential. And I agree environmental interventions and supports can also help tremendously.
Still, unless you have been in someone else’s specific shoes, as a spouse for example caring for a spouse with behavioral variant FTD, a young dementia, who is threatening and assaulting your six year old son – or you as his spouse (true situations) and even nursing homes will not take someone this violent, it is not always possible to manage things and keep everyone’s interests and needs met.
I don’t believe it is just about the person with dementia’s needs, although obviously important, but also everyone around them too. Unless you’ve been in these situations I hope you don’t make sweeping statements that feel very judgmental and unhelpful to real world situations. We don’t help caregivers in these situations, especially spousal caregivers much at all on top of it as a society. They are expected to spend all of their spouse’s and their retirement savings too before there is much of any help at all with what becomes 24/7 care.
I know for a fact that some of these tranquilizing neuroleptics have helped some otherwise unmanageable situations. Being too rigid really can hurt our message in my opinion.
With sincerity, C
They can be life savers though for families trying to manage violent or unmanageable behaviors brought on by brain deterioration from dementia. Some people don’t have these symptoms. Some do.
I agree that Big Pharma is ruthless and making profits by pushing and lying about drugs. That said, sometimes these drugs have desired effects that allow for families to cope with loved ones with dementia. I know they can be easily overused, but unless you have experienced losing a spouse or close family member to dementia, please don’t assume one argument addresses all situations.
Please know that I agree with 95% of what most of you have shared. There can be a time though that these drugs, on balance, improve the overall situation when caring for a person with dementia.
My husband has been diagnosed with advanced Early Onset Alzheimer’s and FTD. Many with this form of dementia, especially behavioral variant FTD (a younger onset dementia) can become extremely upset and anxious, aggressive and behave violently toward others, sometimes their own children. This is a result of organic brain changes.
While I agree that psych meds are extremely misrepresented by profit driven drug companies and they should be used only with full informed consent and for minimum amounts of time if ever, I have been humbled as a spouse of someone with dementia. This condition is not related to something that can be addressed with therapy or other means, beyond a point.
Medications to calm and tranquilize a person with dementia can be overused and abused no doubt. Neuroleptic drugs used in those with Lewy Body Dementia in particular can have some of the worst side effects so should be used minimally. But I would also say that these drugs do often lessen some of the most hard to manage behaviors and can be lifesavers for families and caregivers. The last caregiving family members need is judgement for managing a terribly difficult, lonely, financially and emotionally draining, sad, and sometimes dangerous situation.
Hoping there can be an appreciation of the complexities in these situations.
Jill, thank you for sharing this with us. You explain so clearly the way the system robs us of our agency, voice, trust in our own experiences and power. Blessings to you
Thanks for your response Sera. I am familiar with the differences of opinion about including peers in anything ‘clinical,’ including Peer Supported Open Dialogue. That word itself is a huge problem and assumes a medical, individual pathology understanding before there is any conversation about what’s happening. The invitation for polyphony and disagreement is one of the things I value most about POD and the dialogic approach.
I share many of the concerns I’ve heard about ‘peers’ on treatment teams, especially with the ongoing power imbalances that keep people with lived experience in token or junior clinician type roles. Systemic power is a real and pervasive concern and has led me to push for an approach where peers are at least equal in power and number to any other role on the team.
As someone with survivor, therapist and parent experiences with emotional struggles, I have noticed that we often still turn to or end up in the current medical model system when things get really tough or when we don’t know of or can’t find the much better alternatives out there like Alternatives to Suicide, peer run respites and HVN. POD is the best thing I’ve found so far, but always welcome the dialogue about better ideas.
With respect always
Yes, risk assessments for professionals! I love it
Life takes courage and sitting with someone in the most difficult spaces takes more than most ‘professional services’ support, allow or encourage.
I fear professional responses and ‘care‘ more than almost all human experiences of emotional and existential distress.
The best “alternative” I’ve found when one may want a bit of what professionals offer is Peer Supported Open Dialogue, (POD) with at least equal numbers of peer and clinical 50:50 staff facilitators.
Thank you Sera
Thank you for this Stephen. I agree with your thoughts about for profit Pharma and other market driven medical research. I worry that our systems are very corrupted by the influence of money and other systems of power, and no longer are what they claim to be.
My personal story is one of many millions of examples of the harm perpetuated by the misrepresentations and blatant lies of Big Pharma.
I was prescribed a medication for prolonged and serious morning sickness during my first pregnancy. The drug I used, (only half the dose prescribed, but for 5 months) was Phenergan. My child, now a young adult was born with developmental delays and labeled on the “spectrum.” I have come to strongly suspect that much of what gets called autism is probably a form of neurological damage – and that the rising levels of this damage (also known as the incidence of “autism”) are most likely related to the fact that people, including pregnant women and their children are not protected from the harms caused by for profit Pharma.
I find your ending quote powerful,
“To ask, as Albert Einstein did in 1949, ‘Why Socialism?,’ we might, if we answer without reflex, be tempted to respond as he did, that ‘the economic anarchy of capitalist society as it exists today is, in my opinion, the real source of the evil.'”
Your work is much appreciated.
Thank you for sharing your thoughts about how therapists can best be with the people that they support. Your description of being a humble presence reminds me of the practice of Peer Supported Open Dialogue, POD, or Open Dialogue, both ways of being with others in dialogue rather than offering goal directed, advice giving interventions. I also remember an article about avoiding becoming a colonizer when offering any type of counseling or support for individuals or families in which we assume that we know best or better than the individuals we work with. Thank you for the “dialogue,”
My son was diagnosed with a developmental disability (“high functioning autism”) as a young child after I used Phenergan (Promethazine, an antihistamine) for severe morning sickness (Hyperemesis Gravidarum – HG) from month 2 through month 7 of my pregnancy. Although I was reassured that it was safe and the benefit outweighed the risk to my baby, I only used half the prescribed dose.
I have come to believe that individuals diagnosed with developmental challenges such as ADHD and autism include a group of people who have had some type of brain/neurological damage that could have resulted from multiple causes including but not limited to drugs the mother took in pregnancy such as SSRIs or Valproate (or before pregnancy) and other neuro-toxins that she had in her body. I think that there is more than enough evidence that this is true, but our FDA and drug industry does not properly do the research, share the information and protect us from what should be known and forbidden. There were other options to treat the HG (that were not offered to me with my first son), that I used with my two subsequent children, such as home rest and an IV to stay hydrated through the HG.
Great article. I agree that we need to address the underlying cause, unrestrained capitalism which is now running our so-called democracy. I would hesitate to criticize teacher’s unions, although I agree that any human institution, even the PTA can be corrupted, but this does not mean that unions don’t add some counter-balance for workers to our out of control corporate power. (None of us will benefit from the weakening of unions).
So, where do we start? Overturn the 2010 Citizens’ United Supreme Court ruling giving money the same rights as free speech. (The more money you have the more influence you have over elections.) I would also do what you’ve done here, bring up the elephant in the room, unrestricted capitalism. I need help figuring out the actual next steps, but voting, running for office, joining together to support each other in these efforts and NOT becoming a professional complainer within the system are all important. Thanks for a very good article!
Thank you Sarah. We all should be very worried about the direction of our world, including in ‘mental health services’ – specifically the fact that Big Pharma, psychiatry and other trade and big business interests benefit by funding biased “scientific research,” defining “Evidenced Based Practices” and then using that “expert” authority to label and force “treatment” on us for their own benefits and profits. Thank you for repeating and amplifying the words and concerns of Matt about what needs to change. This will take all of us.
Oh No, this is so very sad and tragic. I met Matt in person last year at ISPS after reading his MIA posts for a very long time. He was deeply kind and insightful. He was fearless in his work to expose truth. This is a reminder to me that we are our brothers’ and sisters’ keepers. Please reach out for connection and do not give up my friends. Life can be unbelievably painful at times. Matt, RIP and know that we will carry your message and spirit into tomorrow. Wishing your family peace and healing.
Thank you Frank. I could not agree more. Thanks also Corinna for your work and for reminding us once again about the deeply upsetting health disparities among those people who are labelled with a psychiatric diagnoses and given neuroleptics. I hope we can continue to help educate people about all the things that help people move through emotional distress, how medical model treatments cause/add to the problems and how individuals can take control of their lives beyond the medical model system.
Hi, I really like your ideas about accepting a winding, personally chosen and individually paced path toward adulthood. I agree that our culture creates expectations that contribute toward great pressure on young adults which can then lead to an emotional crisis. My belief is that unrestrained capitalism, which creates economic pressure and great inequity is behind this competitive, one size fits all system. Thank you for sharing your thoughtful perspective.
Thank you for this much need summary about NAMI and other big mental health organizations’ ties to Big Pharma. As a peer, a parent (who helped to successfully keep her young adult son out of the system 3 years ago when he had what he called an existential crisis at the age of 19) and as a person working as a peer-professional leader in the system that you describe, you have again given me much to think about. I keep hoping we can make change from within, but it reminds me of trying to make change within our political structures that are so controlled by Big Money and lobbyists. My eyes are open and I hope to either find real value in my work to create true alternatives in the system or find other work. Thank you for all you do to light the way.
Thank you for this article exposing more of the untested and/or hidden harms of prescribed drugs. I blame my son’s autism on Phenergan which I was prescribed for 5 months while pregnant with him for severe morning sickness. Do you know how to insist on more research and information on the risks of this or any prescribed drugs during pregnancy? My sense is that part of the rise in autism is directly related to the surge in the use of many medications by women of childbearing age. I also consider both the lack of research and the lack of full disclosure of the known risks of prescribed drugs, especially in pregnancy a crime against humanity.
I was impressed that my young adult son came through a two week experience of what gets called psychosis almost three years ago with the help of an Open Dialogue trained psychiatrist, a supportive family therapist and our family network who was very committed to keeping him both safe and out of the hospital. He has since shared that there was a questioning part of him that gained strength as we connected and shared our thoughts and feelings while also deeply listening to his non-consensual experiences. I have come to believe that the respect for all voices in the dialogic process empowered his agency and self understanding while also helping each of us hear each other and ourselves. He came through the ‘psychosis’ with only 3 nights of Klonopin to help him get back on a sleep schedule and has not experienced psychosis again. The respect and curiosity we offer each other, especially at moments of great intensity or vulnerability can be very empowering and healing – quite the opposite of the diagnose and drug medical model! Thank you for all of your very insightful work Joanna.
Rufus, thank you for sharing Chris’ story.
Chris, I deeply appreciate hearing about your resilience through your experience of medical model psychiatry. I am very saddened to hear of your horrible mistreatment, repeated disrespect and psychiatric oppression. My heart goes out to you. Wishing you strength and healing in the years ahead.
This type of resource for parents is badly needed as an alternative to drug company sponsored propaganda and so called ‘grassroots’ groups such as NAMI that reportedly receive about 75% of their funding from Big Pharma. (see NY 2009 Times article about this). Thank you
Yes, we need socialized non-profit driven care for all, care that is voluntary and offered, never forced.
Still there are times of great pain and crisis when I have found professional help critically important. I’m not referring to ER’s and the medical model, but humanistic therapists, peers, mindfulness teachers etc. Some moments of crisis are beyond everyday (yes, often missing) community support. What can we do to help create these humanistic, non-medicalizing responses? I think there is a place for paid professionals during these trauma related, existential and/or spiritual crises.
I hear you. I would hope to find governmental and independent foundational financial support for these efforts. There is a small amount of financial backing in the US from these sources at the moment. My hope is that we all find ways to build a more equitable, socialistic democratic society.
Interesting discussion. As a person who was locked up as a young person and rejected/escaped the medical model but found help in therapy and mindfulness teachings, a parent of a young person who in the summer of 2014 went through a two week extreme experience (with an Open Dialogue informed approach) without heavy drugs (just some very minimal drugs for sleep for a very short time) and is now living a full life without these difficulties and as a mental health counselor and “professional” who has struggled for 34 years to find my way to meaningful “help” for those in need, what should I (we) do? I agree that our society is the reason so many of us struggle, but people do struggle with real pain, extreme experiences and life threatening situations. How can we support or respond to them in our current neoliberal, capitalistic world? Where do we start? I ask these questions with humility. I am still trying to find my way to change things for the better. So far, the dialogic, relational and peer approach are the most democratic and non-violating ways I have found to respond. Thank you for all of your shared thoughts.
Your humility, ongoing self examination and scientific search for truth are admirable.
Thank you again
Glad to see his honest self reflection. However, I know that his assertion that, “There is no doubt that antipsychotics are necessary in acute active psychosis.” is not true. I have known several family, friends and others who have fully recovered from psychosis without neuroleptics and with alternative support including dialogic connection. Unfortunately, we don’t give most people experiencing psychosis this option.
Thank you again for all the discussion,
I like Paris’s suggestion to use “both…and” to describe how a combination of adversity, developmental issues and many other factors may contribute to extreme experiences or other emotional/mental distress. More than anything, I hope we hold our theories lightly and remain open to the dialogue as it unfolds with the person experiencing distress and his/her network.
Yes, I am familiar with object relations theory. I agree with the central tenets of this theoretical understanding of human development in relationship to others (initially parents). People must overcome both the fear of abandonment and engulfment in all relationships. The safer we feel with our first caregivers the more we build a strong sense of self. Yet, having worked through many, many crises with many people, including my own, it’s not always this straightforward, not at all.
The most hopeful response(s) to crisis I have found is Open Dialogue and Need Adapted Tx. and peer support. The worst response is the hospital and the medical model. Hope we can move toward person-centered dialogue without preconceived ideas about the cause of crisis. Humility sometimes is more important than the most well conceived theories. Thanks again Paris and Matt. All the best…
I would like to comment on some of the research you referenced above. I hope to continue to challenge some assumptions that tend to blame parents, usually the mother, for difficulties with development. I am a therapist, parent and a peer and I’ve spent my entire adult life coming to this perspective. Humility is the best approach when we offer support to those in crisis and their families.
The studies that look at how mental health crises relate to adversity and difficulties with attachment show correlations between the two. It’s very clear that adversity and later mental health conditions are correlated. However, when children fail to feel safe and secure in their attachments and lives, the reasons (causes) are less clear. Many other factors beyond maternal personality and the elements mentioned in the ACE study may be involved.
I have 4 children, one on the spectrum. As someone who has had many years of psychodynamic therapy, including much reflection on the problems with my relationships with my parents growing up, self help, education etc etc, I don’t believe that I caused my son’s developmental/spectrum issues anymore than I caused his siblings’ personalities. (Perhaps the medication I was prescribed for severe morning sickness for 5 months caused his autism though!)
Secure attachment is critically important for all children. Nurturing and safety are vital. But not all kids who have mental health crises have parental caused attachment problems. Kids who are vulnerable can be born with sensitivities that are magnified as they struggle in a difficult world. Parents may have done everything in their power to help (often have) and still have young adult children who find growing up and living in the world overwhelming.
Just because mother and child had difficulties when these kids were infants does not mean that the problems were “caused” by mothers…these children may have been born with very different nervous systems and developmental challenges. In addition, poverty, racism, health crises, bullying and other complex forms of adversity may exist. To later blame individual mental health crises on attachment to mothers is presumptuous and even harmful. In any case, as a parent (and a peer and professional) I have come to believe that it’s not helpful to hold to one theory.
People (parents) know when they are being judged and I feel it a bit here. Studies that show correlational relationships do not explain the complex dance of life. Furthermore, even though there is truth in some of these theories – that parental difficulties can cause trauma and developmental problems in children – jumping to these assumptions is probably neither fully accurate nor that helpful for individuals and families in crisis.
Again, I could not agree more that early relationships and family experiences are a part of what leads people to have emotional problems and/or more well adjusted lives. BUT, there are many, many other factors affecting people beyond maternal attachment and the 10 challenges listed in the ACE study. My question is how to keep an open, humble perspective as a therapist, support individuals in crisis with humanistic, non-medical model approaches and bring people together in dialogue. This is what I have found most helpful.
I appreciate all of the discussion here. My primary perspective is that “dialogue,” (as in Open Dialogue or Need Adapted Treatment) between family members and the person experiencing distress can help tremendously. “Polyphony” and not necessarily full agreement on everything can help people hear each other and work things through. My hope is that professional supports join this process humbly and not with preconceived (or prematurely conceived) formulations and theories about what causes what in the family.
Having been a part of these dialogues in my own family has been eye opening. People (parents, kids, siblings etc) in the same family can understand and experience the same things very differently. Yes, no doubt, attachment issues, unhealthy communication patterns, unresolved parental pain and issues, overt abuse and unhealed trauma as well as personality differences may all cause harm to children in the family.
However, I would again caution us not to fall back on our professional theories and preconceived ideas. Yes, early attachment is critical and usually happens between mother (as opposed to father) and child. Developmental (neurological) problems such as autism are on the rise and can negatively affect these early developmental experiences having nothing to do with mothering. Research is showing that these developmental issues are often biological in nature, although with warm environments, targeted behavioral interventions and neuroplasticity, they too can be overcome.
We must be very careful not to fall back on blaming mothers. Mothers in particular often carry (much) more of the parental responsibility and are also the first to be blamed for complex problems, sometimes having to do with absent or abusive fathers, school systems that don’t work, employers that are not flexible etc. I much prefer dialogue in which professionals come in to the family meetings as humble listeners and try to understand and facilitate communication between others and ultimately healing.
I realize that both of you, Paris and Matt, appreciate the complex causes of family issues and what may lead to “psychosis” or other extreme experiences and are not intending to blame anyone, especially fathers or mothers. However, some of the theories themselves jump to conclusions such as the concept of “disorganized attachment” which may have some value, but also may be entirely wrong as an explanation. These concepts are at best theories and may not be anymore helpful to the family than diagnoses are. In fact, I find some of these ideas presumptuous and harmful. Non-judgmental and humble dialogue can instead be immensely helpful in the process of crisis response and longer term transformation.
Thank you for this insightful interview with Paris Williams, one of my mentors. Paris actually was there for our family as a kind support 2 1/2 years ago when our 19 year old son went through a 2 week extreme state with 24/7 home respite, a dialogic, family approach and minimal meds (just for sleep for a few nights). Our son has not had another extreme experience and is thriving.
I want to suggest that we, as a community, remain open and humble about all the possible and unknown causes of ‘psychosis.’ Trauma and developmental problems certainly are big factors in later emotional pain and upheaval. I would also argue that living in this stressful world, the experience of being bullied, PTSD of all kinds, not fitting in socially, maybe being on the “Spectrum” (which I believe is probably related to more and more expectant mothers taking pharmaceuticals or being exposed to other toxins), economic or health related adversity etc. also impact children and can lead to mental health crises. Humility is something mental health professionals have often lacked. I hope we don’t make this same mistake by assuming parenting problems are the prime cause of emotional difficulties. Parents almost always are doing the best that they can. In some cases, they may not have contributed at all to their child’s emotional difficulties. In most situations, parents are trying to help when their kids have emotional struggles and need our support.
Pain and existential mysteries are also part of living so intense emotional transformations are a natural part of healing and growing. So much contributes to each person’s path and challenges. Thus, even though this interview with Paris shows how parental trauma and pain can contribute to mental health difficulties in children, we should not simply assume that this is the primary cause of emotional pain in children.
Thank you Matt and Paris for this great interview. More than anything, I value that you have reminded us that emotional suffering has meaning and is related to life experience.
Thank you David. I was once like your daughter and can assure you that support, time, therapy and maybe yoga would be much better choices than an SSRI drug for her teenage anxiety and struggle. I hope her mother realizes that these meds have unpredictable and unknown effects on a teenager’s brain and can make things much worse. Best Wishes to your daughter, you and your ex-wife as you negotiate the challenges and joys that come with adolescence. Hang in there.
Thank you once again Robert Whitaker for speaking the truth about psychiatric drugs. My son went through a 2 week psychosis over two years ago with very minimal meds (benzos) for a few days just for sleep. Using an Open Dialogue informed approach, he came through the experience using a home respite with family with him and trying to connect 24/7. Since then, he has not experienced a recurrence. He continues to work through some issues, pain and existential challenges related to growing up with his therapist who is also a mindfulness teacher. I cannot say enough positive things about the power of simple meditation and living in the present. He and several of us have started meditating and found it very helpful with anxiety, worry and mood regulation.
All of this together has kept us moving forward individually and as a family with minimal use of meds. Long term meds are NOT necessary for recovery from all experiences of psychoses and other extreme experiences and overuse may actually interfere with the insights that may be gained with dialogue and mindfulness practices. I say this as a parent, a peer and as a clinician. Each of our expertise counts and we all have the right and the duty to examine the research and weigh in on the use and overuse of medications in psychiatry.
Thank you once again for your tireless, heartfelt advocacy and for speaking truth to power. The struggle continues…thank you for your leadership.
Thank you for sharing your story. My heart goes out to you. I too found my way forward beyond the mental health system. Friends, exercise, mindfulness meditation, the Serenity Poem/Prayer and taking one day, sometimes one breath at a time has helped. Know that you are not alone. Your story is touching and inspiring. Wishing you all the best…
Your essay really touched me and I can relate to what you describe. Many of us working in the “system” are complicit and yet also victims to secondary trauma as a result of what we witness. I wish I could say, after over 30 years working in this field that I no longer have this type of experience, but I cannot. Almost every day that I go to work and witness heavily medicated people who have given up their autonomy and self definition and are , “in recovery” I wonder what we are doing. There must be a better way.
Thank you for putting words to this trauma and reminding me that we should not “comfort those in power at the expense of those without.”
I am sorry for your and your family’s extremely difficult experience. It sounds like coming off the psych meds suddenly and then being refused immediate help when you went to the ER several nights before this tragedy played a big part in your loss of control. As human beings we are vulnerable to many things, and do have to take responsibility for our behavior, but it does sound like the sudden psych med withdrawal was a BIG factor here, that would cause most of us to “lose it.” Regardless, you and every person deserve to be treated with respect and kindness. The type of treatment you describe here only further hurts people and must stop. It’s not easy, but I will never give up trying to make this society and world a more humane, sane and peaceful place. One last thing – Mindfulness has been very helpful to me and many people I know…it may be worth a try, now or in the future.
Thank you for this beautiful article. Our Western profit-driven culture is about avoiding truth and pain at the expense of joy, peace and community.
I appreciate your sharing your powerful story with us. Your persistence is inspiring. We need more people like you to tell the full story of meds, the (sometimes) short term benefits and long term consequences. I am also someone who was hospitalized and diagnosed at a young age, but I got away from the medical model approach to my problems soon after. It’s so sad that we must protect ourselves not only from our inner struggles, but even more so from the system that claims to help us. Best Wishes Naas!
Thank you for another insightful article! I agree with you that diagnoses often cause great damage. Labels take away from our curiosity and openness toward each others’ stories. Dialogue and connection are vital for people to move forward through emotional and mental health crises; diagnoses often derail this process.
Thank you for this powerful essay and your call to action! I’m with you and agree that there is much day to day work to be done to challenge and change racism and misogyny. I also thank you for reminding people never to let their feelings be disrespected.
Great article! I’ve spent my life, first as a peer in the late 70s (before we were ‘peers) then 30 plus years working in our field and in recent years a Mom of teenage and young adult children who have had some bumps in the road. One of these ‘bumps’ was a 2 week period of psychosis, 2 years ago that we successfully got through at home using an Open Dialogue approach as a family. Mindfulness has also helped us, including me. There are better ways. You really get it and I so appreciate your perspective!
Otto, thank you for this, although it was difficult to read given your heart wrenching experiences… Please hang in there, keep writing and know that we are with you.
I appreciate your wisdom. Thank you for sharing your story. You sound clear and strong and are making a huge difference. I also struggled with very difficult eating disorder issues earlier in my life and found that they were my way of trying to protect and comfort myself. Trusting our wisdom and the meaning of our struggles is critical…wishing you healing and strength. Thanks again!
Glad to see the research catching up with what many of us know. Exercise really helps us keep going and reduce and eliminate sadness and depression. My daily 3 mile walk has kept me moving for decades better than any antidepressant ever could and with no negative side effects!
Thank you for this article. I love your questions regarding what a trauma informed community would be like. Your essay shows how far we have to go to create such an alternative. Speaking from firsthand experience, these approaches work.
However, I worry that we are creating growing numbers of traumatized individuals in our corporately controlled world where human life is disregarded. The presidential election in the US highlights the level to which our so-called democracy has been bought and sold, including the ongoing damage done by the mental health industry and Big Pharma. My hope is that we will consider the overlap between big money, oligarchy and trauma. We need leaders who represent us, not corporate interests which create wars (trauma), poverty (trauma), iatrogenic illnesses (trauma), mental health conditions (trauma), climate change caused by fossil fuels and coal (trauma) and for profit jails (trauma), among many other traumas.
Noel, trauma is related to most forms of human suffering. I hope we work to heal existing trauma and stop creating new ones.
Thank you for sharing your powerful and personal story. Your courageous honesty is an example of what we need in my opinion to help re-create services, supports and respites for people working through altered and extreme experiences.
Thank you for is article Dr. Gold. In addition to the generational effects of SSRI treatment, could you comment on any known damage to the developing fetus when mothers are given other psychoactive drugs such as Phenergan? I was given this drug for 5 months during my first pregnancy for severe morning sickness. I worried, resisted it, was reassured and took half the dose. My son, now a young adult, was diagnosed with “high functioning autism” as a young child and has had learning and social difficulties throughout his life. Could my use of Phenergan in pregnancy be related to his developmental challenges in your opinion?
I worry that the rising rates of diagnoses of autism are related to the rising exposure of pregnant women to pharmaceuticals and other toxins. Please let me know if you have any thoughts on this. I know much more research needs to be done, but I worry that this won’t happen and that our FDA is not properly protecting us from Big Pharma’s focus on profits and their corrupting influence of psychiatric and other medical research.
Thank you for this Steve. We need to tolerate the uncertainty of those moments and take them one step at a time, listen, talk, create respite and see where they may lead. There is no need to rush or bury them under loads of drugs. So sorry this happened to you 15 years ago.
Best Wishes as you continue on your journey. I have seen the protein powder, BCAA, which has been studied, help some with reducing a speeded up limbic system (whatever the cause). See the article below:
Mindfulness meditation has also helped several in my family as well. There is a book called Mindsight that first introduced me to the benefits of mindfulness for regulating our emotions when we’re going through intense times.
None of this is to minimize the meaning and value of those moments for us, only to offer a couple alternative supports to help come through the intensity…Best Wishes
Thank you for this article, My hope is that psychiatry can transform itself and live up to this vision. Yet, I doubt it can given the current, profit before people economy that we seem to worship in this country.
Question: Speaking of alternatives, has anyone tried BCAAs as a nutritional approach for help with what gets labelled “mania?” I have seen it work wonders within 6 hours of beginning the supplement, as described in the study below. Yet, (no surprise here given the relative lack of big profit potential), little follow up research has been conducted on this very promising nutritional “treatment.”
Here is a study of BCAAs for mania:
Also, meditation is really effective with almost all mental health problems. We need more research on this approach as well!
Thanks again for this article and to all for the rich discussion!
Thank you for this. I’m glad you got out of there, but so many do not. It’s really difficult to find alternative spaces and enough support at the most wrenching
times, so people fall into the hands of the medical model. Wishing you well.
This is an area in which I know quite a lot since I was deeply affected by this condition as a teenager, over 35 years ago. My experience was quite severe and I could have died given the degree to which I was systematically starving myself by over-exercising and under-eating for several years.
My thoughts, now that I have had a full and lasting (over 3 decades) recovery from this difficult period in my life are that starving oneself is a meaningful response to a life of pain in which one feels that he/she has little power to respond to his/her life situation. Working with a therapist who helped me see the lack of safe boundaries in my family of origin, my tendency to be a perfectionist as a way to gain approval from a family system that ignored me, our society’s tendency to idealize thinness and objectify women and my lack of maturity due to my lack of consistent and sufficient parental nurturing were all very related to my restrictive eating behaviors and obsession with my weight.
After several years working with an insightful, person-centered and trauma informed therapist, I moved past my obsession with weight and have remained free of eating and or weight concerns for over 30 years. I can assure you that DNA research would have had little benefit or meaning for me, then or now. When it comes to most emotional and mental health concerns we must ask, “What happened to you?” not “What’s wrong with your DNA?”
Sure, providing humanistic understanding and support, person-centered, trauma informed therapy, lessons in mindfulness and CBT, social and academic support could help teenagers going through difficult emotions as they face young adulthood. Medications and diagnoses will not improve outcomes and are much more likely to cause harm. I wish I trusted our mental health services, but I don’t. Any services built on research sponsored by Big Pharma is likely very biased and has helped create our misguided, medical model paradigm in this country…sad and frightening
Thank you for the reminder to focus on little things when this big ole world is too much. I agree that life can be so hard. I’m glad that you and your turtle came together and helped each other keep going. This is a beautiful and touching story and I will carry it with me.
My hunch is that all these trinkets and lunches have an inverse relationship with truth in psychiatry!
Thanks for your work and this article.
Thank you for sharing your story with us. Life is so many things, but rarely linear. Best Wishes on your ongoing journey.
This is one more clear reason why we need to overturn Citizen’s United. Our government (and our science) has been undermined by the very corporate interests it must oversee. Bernie Sanders speaks about this frequently. We must insist in resuming control of our democracy and keep full integrity in public safety and science…we obviously no longer have real “science” or oversight we can trust!
You clearly sum up an example of what should be obvious to all of us and is now backed by numerous medical studies. Our environment affects our biology. Stressful and traumatizing experiences cause harm and contribute to mental suffering and distress. This is not about “blaming” parents, but realizing that human beings are both nurtured and/or damaged by their environment and relationships. Racism, poverty, sexism and personal experiences of abuse all leave their mark on our psyche.
You rightly point out that the word ‘trigger’ is misleading. Environmental harm can ’cause’ the problem. In addition to behavioral experiences, I would include environmental toxins such as the iatrogenic harm caused by prescribed meds to adults, children and developing babies in pregnancy (related to skyrocketing rates of autism).
Thank you for your work.
Corporate profits drive our so-called “science.” This is more BIG news that will be ignored by corporate media where every other ad is for a medication.
Thank you for sharing your difficult story cat. Glad you survived through that psychiatric nightmare. I couldn’t agree more about the value of Rob Whitaker’s work for us and others as they search for ways to ease their’s and others’ mental anguish. We all have come together in search of truth on this website. You are so wrong Dr Frances. Please ask us before you make these unfair and baseless judgements about Mr. Whitaker’s books, lectures and work.
I am a mother of a young adult who experienced “florid psychosis” according to his therapist, yet came through the experience after 2 weeks, with minimal meds (Benzos used for a few nights to help him get back to sleeping at night) using a dialogic home and family based approach with a psychiatrist trained in Open Dialogue. This was 18 months ago. The psychosis has not recurred, he is not using any meds and he is in his third year of college. This would not have happened this way if we had taken him to an ER.
Robert Whitaker has raised very valid and important issues about the dishonest and problematic ways psychiatry is practiced in this country. As a licensed therapist, a “peer” who experienced my own full recovery 38 years ago and as a family member, I am so thankful for Robert Whitaker’s work. I am not alone.
Thank you for the reminder that our brains are both biological and a result of environmental nurturing and/or trauma. As I’ve shared on this site, I am convinced that one of my sons suffered neurological damage, later labelled autism and learning disabilities, as a result of the Phenergan I took for 5 months during my pregnancy with him for severe morning sickness. We need to remember the neurological harm from prescribed drugs and environmental toxins that may be a big cause of autism and many other problems in developing babies. We need to study environmental toxins as well as the deprivation, trauma and abuse that can also cause mental anguish and mental health conditions. Our biology and our experiences interact from day one throughout our lives.
Thanks for these comments and links Someone Else!
Yes, unregulated capitalism is at the root of this. Corporations designed to make a profit above all else, willing and able to compromise public safety, honesty and all integrity to increase their bottom line for stockholders. Unfortunately, until we get corporate money and political action committees out of our electoral and governing process, we will see more (and even more) of the same. We have a rare opportunity to take a position on this very topic in the current presidential election.
In addition to the misinformation and propaganda promulgated by these Big Pharma screening tools, one of my biggest concerns is the issue of “medical neglect.” In my state as in many others, parents who refuse to follow their child’s school’s advice and have their child evaluated for a “suspected” mental health problem can lose custody of their child due to “medical neglect.” I have seen this happen several times and it is beyond wrong and extremely heartbreaking.
It’s also important to realize that any time one of these screening tools or a “professional” evaluator determines that your child needs ‘treatment’ (ie: drugs) for an emotional difficulty that parents who do not follow this ‘professional advice’ are also at risk of being charged with medical neglect. Parents should be really careful when either agreeing to these pharmaceutically pushed screenings and/or to agreeing to any professional evaluation for your child. It’s critically important to find a professional, (if you ever feel you need one to advocate for services for your child or for any other reason) that supports a non-medicalized response to childhood difficulties.
This whole situation is extremely concerning. Thank you Sera for a comprehensive discussion of a critically important topic!
I think you raise some important questions regarding the differences that get labeled ADHD and those that get labeled as autism spectrum disorders. Some people conceptualize some of the difficulties with learning and attention that get labeled ADHD as being one end of a long and varied “spectrum” of conditions that includes what gets called autism. The use of alcohol, crack cocaine, thalidomide and many other neurotoxins have been shown to cause neurological damage to fetuses in pregnancy. This research is solid. These neurotoxins have also been shown to cause attention difficulties and autistic like behaviors in experimental animals as well. While a warm and caring environment and capable, loving, attached parenting helps any child reach his/her potential and have a more fulfilled and well adjusted life, some developmental problems are clearly caused by physical harm.
I don’t think this negates all the great points made on this blog about the harm of the medical model and the biased science sponsored by Big Pharma or other powerful and corrupting influences. The fact that physical harm may cause certain traits or challenges, such as behaviors that get labeled autism also does not deny how important a loving attachment to caring parents is for children or how much peer support, hearing voices groups, respites, good quality humanistic therapy etc etc can help us grow through and heal psychic pain. Beyond this, physical causes of certain developmental difficulties does not minimize the harm that trauma and neglect can also inflict on people. We are both nature and nurture and a complex interaction of the two.
Thank you again Sandy for this thought provoking article. I agree with your conclusion that all of us could benefit by respecting and listening to what each of us struggle with as we try to understand and support people in working through/living with psychoses and other extreme, complex, emotional/human experiences.
I have my own lived experience of recovery dating back 38 years and have also tried to find my place working as a clinician/professional in the mental health field. I have been very humbled over time, especially in recent years when two of my four teenage/young adult children struggled through various emotional difficulties, one with an experience of what could be called psychosis. We were able to use a combination of individual and family therapy, time without labeling (tolerating uncertainty), meditation /mindfulness, minimal PRN meds and other supports to work through these difficulties together. Both of my adult children are moving forward and enjoying their lives at this point for which I am grateful.
All of this has taught me to be more humble and to respect the complex and the known, theorized and as yet unknown things that may contribute to extreme emotional experiences. I also see how the medical model’s focus on diagnosing and medicating symptoms is very simplistic and often makes what is often both a painful and a mysterious mental health/existential crisis much worse. My questions, as yet unanswered by the field are:
Do we know that (most) mental health diagnoses are valid?
While medication addresses immediate symptoms, given it’s severe side effects, is it worth the risk?
Might it be possible (yes, in my son’s experience) to come through psychosis or other extreme states with intense support and very little medication and may this have better long term outcomes?
Once someone is on psychiatric medications when and how should they come off these drugs?
My hope is that we continue to develop alternative supports that help with extreme states and work to answer the above questions. Too many times we may see our piece of the struggle, but miss others’ valid concerns. Thank you Sandy for once again reminding us that there is some truth in most of our questions and perspectives. Our work is not easy and I deeply respect the sincerity of all that post here at MIA. Thank you for the dialogue.
Thank you again Sera! Tolerating uncertainty is part of Open Dialogue and part of any humble, person-centered approach to partnering with/supporting people through/with various intense personal experiences. My hope is that we honor the time and space it takes for people to find meaning in their experiences, including voice hearing rather than asking the wrong questions and jumping to unsupported conclusions. Thank you for presenting this in such a concise and helpful way.
I will remember your touching analogy as I move forward in my work and personal interactions with people.
My heart goes out to you. I share your rage. One of my sons has a form of autism and learning difficulties that I attribute to my use of Phenergan for morning sickness for 5 months during my pregnancy. Pregnant women and all of us need to beware of using all of these pharmaceuticals. We are regularly misled and lied to by Big Pharma and other corporations.
Your tireless efforts and research and the work of this entire community are making a growing difference. People, including researchers, are listening and responding to your questions and ours. Thank you. We have an exciting and challenging road ahead.
Thank you for your kind words.
I appreciate how clearly you explain how psychosis can develop in people as a result of deep intra-psychic conflicts between an urge to be safe and connected and a competing urge to be free and independent. You describe how this may arise when parents are unable to provide authoritative parenting which is warm and loving and also encourages autonomy and individuation in children. Ideally parents provide both solid roots and strong wings to their children.
I continue to wonder about other factors that may negatively impact families (parents and children) such as economic systems, (e.g. unregulated capitalism that puts profits before people), war, technology that is changing our connections to others in unforeseen ways, government spying and war which makes a certain amount of ‘paranoia’ almost expected, environmental collapse, unhealthy food, too many prescribed drugs, (especially when given to pregnant women or developing children) and religious or political fascism. While I highly respect and agree with your perspective, I have come to humbly appreciate the many complex forces that impact all of us as human beings. Existential stress is pervasive and can also contribute to psychotic crises for deeply feeling people. My hope is that we wonder together, create non-judgmental dialogue, tolerate uncertainty and give people experiencing psychoses and their families support and safe spaces to come through these challenging experiences. I think we, as professionals should hold our theories lightly and realize that there is great mystery in the human condition.
That said, your theoretical perspective is such a rich, humane alternative to the disease model which reduces human pain, especially psychosis to a biological illness. Thank you for all of your time, sharing and research.
My heart goes out to you. Your experience with your son sounds a bit like my experience with my youngest son. He found that meditation really helped him with a school system (and world) that valued test results and did not usually, as we would hope, appreciate and nourish his gifts. He did not ‘fit in’ easily in middle school or most of high school. This was not an overnight success, but has really been helpful over the years. He is now in his first year of college and doing well.
Thank you for the detailed update and for all of your courageous and important work for human rights. Best Wishes on each of these huge, but critically needed tasks. Take Good Care
Thank you for your response. I also value your perspective and share your concern that children can easily be blamed for problems that originate with parents, our educational system or our society. We must do better all the way around!
I am not a doctor. I hear you and am sorry that things sound so difficult. I realize that if someone is on prescribed medications when they become pregnant that coming off the medications also presents a difficult process, so there are no easy answers. Having a doctor you trust, doing your own research and using as many alternatives to meds is my best understanding of what can help. Best Wishes…we all should be respected and believed.
I am in complete agreement with you that better parenting of all children should be high on any research agenda. I just don’t know of any research that shows that what we call autism is caused by (problematic) parenting. However, I agree that the label of autism may be imprecise or invalid and include more than one condition. My understanding is that what is meant by the label autism is something that probably includes neurological differences and damage. Given the skyrocketing use of medications during pregnancy and increasing environmental toxins and the growing number of studies that support these toxins as a cause of neurological harm to fetuses, we cannot ignore these results.
I agree that no matter who a child is biologically, better parenting can only help. We are both biology and experience, not just one or the other. Do you have experience parenting a child with a diagnosis of autism? As someone who has long valued (and still does) looking at the environment (including parenting) as a possible cause for emotional suffering, I have found it quite humbling.
Other toxins as well have been correlated with the development of autism. I share these in response to my concern that some here are still suggesting that inadequate parenting causes autism.
I fully agree that parenting and attachment issues are related to many mental health conditions including some of the emotional problems of children born with autism. However, to suggest that the developmental delays and extreme difficulties associated with a diagnosis of autism are caused by bad parenting is damaging and not backed by research.
Many drugs used during pregnancy have been implicated as a cause for autism. http://www.ncbi.nlm.nih.gov/pubmed/15749253
Taking chemicals during pregnancy should be a last resort. Multiple studies associate the use of anti-emetics, anti-depressants and other medications for other concerns with autism and other fetal damage. Suggesting that autism could instead be related to parenting or other factors is denying the obvious and is both misguided and very damaging and unfair for these parents as they work to help their children overcome the obstacles posed by neurological damage. These chemicals very likely damage developing fetuses and are rarely worth the risk.
Thank you again Paris. I highly value and respect (and agree with) your perspective and your work.
Here is the article I mentioned, https://www.madinamerica.com/2014/09/autism-deficit-super-sensitivity/
Thanks for your response. I agree with your theory about how early attachment and later individuation probably plays a pivotal role in the development of psychosis for some people.
However, I encourage you to be careful about making comparisons or overgeneralizing about what I believe are both very broad and very different types of difficulties – “schizophrenia” and “autism.” I see these two labels as similar in that they are both labels that may reflect conditions that are diverse with varying causes and treatments. I also share your concern about the reductionism associated with the disease model of mental health conditions and think that trauma and attachment difficulties are often a big cause of emotional suffering.
I also shared in a previous post that my son, who has what has been called mild autism experienced psychosis and came through it with no neuroleptics or hospitalizations. Instead, our family used an Open Dialogue informed approach and advice and support from all of our trusted friends, including you to move through this difficult time. Your advice about honoring my son’s existential questions and his need to individuate were very helpful. You reminded us, his parents to support his individuation. Through Open Dialogue many family dynamics were put on the table and addressed.
Yet, I believe that his emotional pain and psychosis also related to his trauma and extra challenges in life which relate to what has been called his “autism.” As a child, he frequently misunderstood social situations, retreated into his own world to cope, experienced bullying and overwhelming feelings of inadequacy in a world that often rejected his differences. He continues to work to individuate and have all the things his brothers have, a girlfriend, a full social life, meaning and independence. None of these things come easy for him.
I would be very careful about comparing the label of autism to the label of schizophrenia, although I think both may be invalid. Schizophrenia may represent a large group of experiences related to adjustment and finding one’s place in the world as you suggest. However, from all of my heartfelt reading and research on “autism,” I have come to believe that it may be explained on one end with individual differences and eccentricities and on the rest of the continuum as neurological damage, often dating back to prenatal exposure to toxins. I am pasting an article from MIA which shows one such possibility. There are many more. The medication I took for 5 months for severe morning sickness with my son, Phenergan, is a type of neuroleptic known to cause neurological damage in fetuses. Had I known this at the time, I would have done anything to avoid this risk, something I was able to do with my later two pregnancies. Thus, research is showing more and more how toxins, including the skyrocketing use of pharmaceuticals during pregnancy probably account for much neurological damage and the dramatic increase in autism rates.
While we explore the psychodynamic roots of mental health conditions and extreme experiences, I think we should remain humble to the very real differences in possible causes of various conditions. We must be very careful not to suggest that parenting causes conditions that likely have a basis in exposure to toxins, such as autism. Antidepressants, neuroleptics and other drugs, including Thalidomide, used during pregnancy (see article below) have all been implicated in the development of autism.
Yes, each person must grow and does face the same challenges to individuate and build a life. Yet, having a condition similar to what we now label autism makes things much harder for individuals and their families and is not necessarily related to attachment issues.
Thanks again for your work Paris
Thanks again Paris for sharing your thorough and compelling conceptualization of family dynamics and the development of psychosis.
I am wondering how you would predict young people who have difficulties associated with (mild) “autism” would vary from others without this challenge, according to your theory? It seems that having developmental challenges could add tremendous stress for young adults and that for them the world may be confusing, unwelcoming and unsafe in many ways, not only because of family dynamics and other factors, but because living in society, individuating and connecting to others is much more difficult for them.
My guess is that developmental difficulties would make the tasks of individuation and autonomy more complex and may increase the chances for the development of psychosis or a related experience. Feeling safe and having a sense of belonging are much more challenging for young people who find connecting to others so arduous.
Thanks for your work.
Thank you for this history and analysis of the family’s role in extreme experiences. One of my sons went through a 2 week extreme experience 18 months ago using an Open Dialogue approach. He has not returned to this difficult state which seemed to have been related to extreme worry and stress, a history of bullying, parental divorce, difficulties related to some developmental challenges and severe existential concerns. You helped me with some suggestions at the time and I will be forever grateful for your support.
I agree with you that family experiences and dynamics are a big factor in the development of psychosis and that they need to be included in our understanding and response to these experiences. Furthermore, trauma is pervasive and come in many forms, often beyond the nuclear family. I am convinced that trauma in all it’s forms must also be considered as a cause. Beyond these, development, growing up and life itself are difficult. Psychosis may be an attempt to cope with and make sense of something beyond comprehension.
Your work is so important. Thank you
Yes, if you have peer professionals they should have supervisors who also have lived experience. Thanks for the article!
Therefore, CBT or other types of psychotherapy are clearly far superior to drug treatment which comes with cumulative and damaging side effects. In many cases, therapy is even a less costly treatment. Regardless, the harm inflicted by the neurological side effects of antidepressants should pretty much rule them out as a viable treatment option at this point, given that psychotherapy works just as well with no side effects.
Thank you for writing this article. After over 30 years working in this field and as a person with lived experience of recovery, I have come to two big questions and I tend to agree with your assessment here. One, “Are psychiatric diagnoses valid (at all?)?” And two, ” Does labeling someone with these diagnoses cause harm?” My answers have left me looking for ways to practice what I know in the small cracks and alternative spaces in our current mental health system. Your article validates my experience, helps me feel less alone and gives me hope.
All the best to you.
Thank you for this thoughtful article. My hope is that we always assume that there is meaning in our own or others’ existential and emotional suffering. Then, as individuals or as supporters of others we can seek to help understand or ease the pain. Calling something an illness or a disease without evidence of such is invalid, damaging and irrelevant.